Dead to us: burger buns.

Thank you, Celiac! No really, I say this without sarcasm. (Believe it or not, sometimes I am actually capable of saying things without sarcasm.) If it weren’t for V’s Celiac, I don’t know we’d ever try lettuce wraps. I know some people have lettuce wraps to cut down on carbs but we tried them out of necessity, as most burger joints do not have gluten-free buns. It started with a family dinner at In-n-Out, where we tried lettuce-wrapped burgers for the first time out of consideration for V, so that she would not feel bad watching us devour a burger on a bun as she ate hers without a bun. I bit into that lettuce wrap expecting to miss the bread but all of a sudden, BAM! Magic happened. I could taste the meat and the cheese and the sauce and even the fries so much more intensely. It was so, so good, ridiculously good. Drool-worthy good. Finger-licking good. I’d say bolus-worthy good, but in the absence of a bun there was nothing to bolus for! That day my life was changed forever. (OK, I’m using a hyperbole here, but still…) I remember eating a burger with a GF bun at a later time at it just did not taste the same. The bread was too dense, and it was all too much, and got in the way of taste. That was the last time I had burger on a bun and I never looked back. Nowadays, I always choose to get a lettuce wrapped burger, even if V is not around. Interestingly, the entire family came to embrace lettuce wraps for the sake of taste. Yes, even my 7 year old prefers lettuce wraps now. Who knew?

Behold our Memorial Day dinner. Jealous? You should be. You are looking at a lettuce-wrapped grilled cheeseburger, made from scratch and with love by hubs, using hand-massaged ground beef. To satisfy the potato fix, next to the burger is a mix of home-baked sweet potato and regular fries, acquired frozen at Costco and Trader Joe’s, respectively. Peaking from behind the fries are roasted Brussel sprouts, cooked in a sauce of olive oil, salt, Sriracha and a touch of honey. (Note to self: next time add more Sriracha for the optimal burn.) A couple of little pickles on the side tie the whole meal together. Total carb count depends on the amount of fries, with 3 oz  = 22 g. Everything else is zero carbs. Wine is of course for grown-ups only, so we are not counting the carbs for it, thankyouverymuch 🙂 This is our T1D and gluten-free life. Not bad, not bad at all…

IMG_1408

Second Diaversary

Diaversary: an anniversary of diabetes diagnosis. We need this anniversary like we need a hole in our heads. Yet, here it is, like it or not, so we may as well mark the occasion with all the fanfare we can muster.

Two years ago, May 22, 2013, our life was suddenly turned upside down. We went to a scheduled well-child appointment, oblivious to all signs and symptoms of T1D, and ended up in the hospital. I think that counts as a bad day, right?

Things were crazy and new and overwhelming at first. Two years later we are old hats at beating diabetes into submission. Granted, we don’t always succeed, but we are not doing too shabby, if I may say so myself.

This morning I made a lame attempt at whipped cream art to kick off the festivities.

IMG_1392

It’s supposed to look like “No T1D” sign. Instead it looks more like abstract art. OK, you can stop laughing now. Hey, in my defense, this was before I had my coffee. V appreciated the effort and I will keep my day job.

Then I dared V to do this stint at school: stick a syringe into her gluten-free lasagna entree and sing “Diabetes you suck” to the tune of Happy Birthday song. She accepted the challenge. Our wonderful school nurse documented the occasion.

IMG_1394

She also gave V this lovely card:

IMG_1400

Our school nurse is the best, hands down!

And then for dinner we headed to one of our favorite restaurants so that V could feast on scrumptious gluten-free cinnamon roll pancakes. With bacon, of course (not pictured.)

IMG_1396

This is definitely bolus-worthy. How many carbs did I guess for this carby, sugary beauty? 100! Gave 10 extra for a glass of milk, resulting in a largest single bolus in two years.

Best part? We were totally prepared to battle high BG. After we got home V played outside with her brother and next-door neighbor and did some running around. Two and a half hours after dinner she tested: 111! Who knows how the night will go, it’s quite possible that the high will catch up with us, but at least for one brief moment diabetes gods smiled at us and gave us a reprieve. We’ll take any reprieve we can get.

F**k off diabeetus! We live well and we will continue to beat you into submission one bolus at a time.

Diabetes Blog Week Sunday: Making Connections

The very first inspiration for Diabetes Blog Week was to help connect our blogging community, and that continues to be the most important reason it’s held every year.  So let’s help foster and continue those connections as we wrap up another Dblog Week.  Share a link to a new blog you’ve found or a new friend you’ve made.  Or pick a random blog off of the Participant’s List, check it out and share it with us.  Let’s take some time today to make new friends.

“I found your post through DBlogWeek and kept reading.”

Someone left this type of comment on one of my posts, and I had just left the same type of comment on someone else’s blog post. While it was impossible to check out everyone’s blogs, I certainly tried to read as many as my time allowed. And you know what, DOC is full of diabadasses, and I was super duper happy to discover awesome new-to-me blogs.

Katy at Bigfoot Child Have Diabetes is a hoot, and she’s living a gluten-free life to boot. Oh look, I made it rhyme! Heh… Anyhow, I do love finding new friends in the DOC who are in a similar situation as my family and have a great sense of humor about it. And I do appreciate a blogger who’s not afraid to drop an f-bomb from time to time, or effin’ anytime.

Pam at Adventures in Diabetes Parenting is also a fellow D-Mom. She’s a veteran at this D-thing has a lot of crazy stories to share, along with some cool perspective and helpful tips.

Jessica at Chasing Lows has my mad respect and admiration. Her Monday I Can post blew me away.

And I just stumbled across Caroline’s Chortling Towards Bethlehem blog. She’s not a D-Mom, but she is a fellow runner, she is currently training for Iron Man (!!!), has a really fresh and honest perspective, and is not afraid to speak her mind.

There were many more other posts and blogs that I really enjoyed reading, but the ones above really grabbed my attention. I can’t wait to read more and connect with more awesome people in the DOC.

This was such a fun and enriching week! Thank you Karen at Bittersweet Diabetes for putting Diabetes Blog Week together. Only 365 days until the next one, right?

Diabetes Week Saturday: Favorites and Motivations

If you have been blogging for a while, what is your favorite sentence or blogpost that you have ever written?  Is it diabetes related or just life related?  If you are a new blogger and don’t have a favorite yet, tell us what motivated you to start sharing your story by writing a blog?

A post that encourages shameless self-promotion? Don’t mind if I do!

Sorry, you are going to have to put up with me as I link you to several favorite posts, as I cannot narrow it down to one. They are favorites for different reasons.

The 10 Commandments post was probably the most fun to write. I sifted through many diabetes memes and laughed every step of the way.

The post about V’s first B-day party sleepover at her friend’s house stands out because it was a big milestone for us. We all survived and managed well, even though it was not always smooth sailing.

This post of 10 things we want others to know and understand about our life became a best-seller. I hope it helped others become more aware of what T1D and Celiac life does and does not entail. (This post also shows that I am unable to do basic counting and it took me a while to notice my epic fail.)

Then in February of this year I blogged for a week about my Awareness Project of living my life in my daughter’s T1D and gluten-free shoes. It was a quite a memorable and eye-opening experience. You can find day by day accounts in my blog by clicking on the Awareness Project tag, and you will find a summary of my experience in this guest post for Diabetes Mine. 

Last but not least, I will leave you with one of my all-time favorite quotes by a brilliant character from my favorite TV show. It applies to life in general, and certainly to life with diabetes.

bSc4CQr

For bonus points, without Googling it, can you tell me what episode it’s from? Mad respect if you can spit out episode title, but an accurate description of the episode will certainly count!

Diabetes Blog Week Friday: Foods

Write a post documenting what you eat in a day!  Feel free to add links to recommended recipes/shops/whatever.  Make it an ideal day or a come-as-you-are day – no judgments either way. 

The last few posts were heavy on deep thoughts. Screw that. Let’s eat!

I took notes and pictures all day Tuesday to document one of our typical days. Without further ado, here is a glimpse into our everyday T1D and gluten-free eating.

On Tuesday V asked for cereal for breakfast. Panda Puffs is currently her favorite, and it’s not too terribly sugary as far as cereals go. She got two servings (1.5 cups total) for 46 g. plus one cup of milk for 11 g., for the total carb count of 57 g.

IMG_1352

By the way, weighing cereal is definitely the way to go. Much easier and more accurate than measuring it.

Her school lunch box is next. It’s often a sandwich with a few different sides/snacks, always including a couple of carb-free options. Here we have a turkey and cheese sandwich with The Essential Baking Company GF bread for 20 g., yogurt for 20 g., and 1/2 cup of strawberries for 5 g. Sting cheese and a handful of almonds are “free”. We always itemize V’s lunch so that she can pick and choose what to eat when.

IMG_1351

Our family meals are always gluten-free. Since both my husband and I work outside of home and kids have a bunch of after-school activities, we rarely have the luxury of having much time to prepare a meal after work. However, eating gluten-free means that we have to cook more and rely less on prepared or processed foods. That’s great for our health but can be stressful and challenging. We have to find recipes that allow us to make quick meals from scratch or from semi-prepared foods. It also really got me into crockpot cooking, because there is nothing better than food cooking itself and a hot meal waiting for you when you get home. That night, we had Sloppy Joe’s on the menu. (Another thing that makes our lives easier is making a menu for lunches and dinners every week, so we shop and prepare ahead.) I used this recipe from Udi’s with a couple of minor modifications. I used ground beef only because that’s what we had, although last time I used a combo of ground beef and pork sausage and it was really good. We do not like the taste of food that’s cooked with fresh onions in the crockpot, so I only used onion powder. I also ran out of chili powder so I used some cajun seasoning instead. And I added a bit of chili sauce for good measure. It turned out finger-licking good!

IMG_1353

Between brown sugar, tomato paste and tomato sauce, the total carb count for the entire crockpot of Sloppy Joe’s was 109 g. Since I used 4 lbs of meat and made a LOT of servings (hurray for leftovers!),  we SWAGed each generous serving at  about 10 g.  Udi’s gluten-free burger bun is 32 g. Not too shabby for a really filling meal! Ideally I try to have a veggie side or a salad, but that particular day we were in a rush to get to BMX racing, so our dinner was exactly as pictured. For the record, no one complained 😉

Last but not least, here are the snacks that I took for V to BMX: Gatorade to keep the lows at bay, Peanut Butter perfect bar for a hearty snack (way easier than making a PB&J sandwich), string cheese for a carb free snack, and Gratify gluten-free pretzels. One neat thing about these pretzels, besides the fact that they taste great, is that a serving size of 23 pretzels is 22 g. of carbs. Quick and easy math tells us that it’s about 1 g. carbs per pretzel.  It makes it so easy to bolus for them – no need to weigh or measure, just count how many you want to eat and bolus.

IMG_1354

In case you are wondering, aside from pretzels that we buy on Amazon, everything else came from either Costco or Trader Joe’s.

Diabetes Blog Week Thursday: Changes

Today let’s talk about changes, in one of two ways.  Either tell us what you’d most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you?

IMG_1357

Arresting words, they are. My child has diabetes, uncontrolled. That is something.

I first saw these words on V’s paperwork after our first follow-up appointment, a month after discharging from the hospital. It felt like a punch in the stomach. Given that V’s A1C at the time of diagnosis was 12.3, uncontrolled made perfect sense.

At our three-months follow-up V’s A1C dropped down to 7.2. At that time we did not fully understand what it meant. Is that good – we asked the Endo? She reassured us that it was perfect, exactly where we needed to be. That was great news. Except, why was her diabetes still called uncontrolled?

Maybe a certain A1C level needs to be maintained for a longer period of time in order to stop labeling diabetes as uncontrolled? Or maybe we’ll be able to manage so well that V’s blood sugars will always stay in that magical 80-180 range that the Endo identified for us. That’s how it works, right? You do everything you are supposed to do, and BG stays within the lines.

OK, you can stop laughing now. But in the beginning I honesty thought that was how it was supposed to work. (Imagine my horror when V got the CGM and we started seeing everything that happens between meals. That is what heart attacks are made of.)

The more experienced we became in our D-life, the more we understood how ridiculous the notion of control was. “Is her diabetes under control?” is one of the worst questions someone can ask us about V. What the hell does that even mean? That her blood sugars are so good you can’t even tell she has diabetes? That she never spikes or crashes? That her A1C is always in the recommended range for her age? That as long as we accurately count the carbs and strictly follow doctors’ orders, everything will work out well?

diabetes2

Right. We quickly learned that T1D does not play fair. That no matter how diligent and compliant we are, many things can still wreak havoc with blood sugars. Activity, food, sleep, illness, stress, hormones, planetary alignments, weather forecasts, and unicorn farts can all send V’s BG through the roof or into the deep basement. Sometimes there is no logic, none whatsoever. I think that sometimes diabetes just likes to be noncompliant for the hell of it. It especially likes to act up as we start feeling like we are getting things… well… under control. It has a sick sense of humor.

But enough of anthropomorphizing diabetes. What I want to know – and perhaps will work up the guts to ask the Endo at the next visit – is what the hell is controlled diabetes? Does such diagnosis even exist? And really, what is the point? I want the words “controlled” and “uncontrolled” gone from describing diabetes, and especially gone from an official diagnosis. There is no need to remind us that every day diabetes management is full of failure. There is no need to remind us that for every one aspect of diabetes management that we have control over, there are ten that we do not. The more we fight for perfect control, the more things slip away. Instead, we need to focus on setting realistic, achievable goals that are mutually agreed upon. Let’s put the notion of control aside and focus on meaningful outcomes, one at a time.

Diabetes Blog Week Wednesday: Clean it Out

Yesterday we kept stuff in, so today let’s clear stuff out.  What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?

I have a confession to make: I am not dreaming of a cure.

*Everyone collectively gasps. WHAT? Is she completely out of her mind?*

Before you start throwing used pods at me or stab me with a million syringes, allow me to explain.

Cure: something (such as a drug or medical treatment) that stops a disease and makes someone healthy again. (Merriam-Webster Dictionary)

A cure would make diabetes go away completely and permanently. Life without diabetes would be grand. We could keep all the healthy habits we picked up, deposit thousands of dollars in the bank instead of spending them on diabetes supplies, and discard illness, worry, fear, pain, stress, frustration, sleepless nights, advanced math, bionic gadgets, 504 plan, and many other unwanted things diabetes brings with it.

Do I want it? Yes, of course, more than anything! I just don’t think it will happen anytime soon. When V got the diagnosis two years ago, I pounced at every article or news that talked about a possible cure in the near future. I got very excited about the next “breakthrough”. I was filled with hope that the cure was just around the corner.

breakthrough1

The reality quickly caught up with me and hope turned into skepticism. “There will be a cure within 10 years”, is what supposedly the diabetes community has been hearing for a few decades. Mice have been cured, those lucky rodents. Humans have not been so fortunate. Promises, shmomises…

images

Instead of dreaming of a cure I am dreaming of better treatments and technology. Now, advances in technology and treatment are indeed developing rapidly right in front of our eyes. Only 1.5 years ago, when we were just starting with the pump and Dexcom, we were talking about how amazing it would be to monitor V’s blood sugar remotely. Today it is a reality, thanks to new Dexcom Share and Nightscout Project. We’ve been dipping a toe in the waters of dosing by CGM instead of finger stick. (Shhhh, don’t tell our Endo. We only do it once in a while.) I dream of a time when V does not have to prick her fingers and I believe that time is only a few years way. My biggest dream is that of an artificial pancreas – a device that will fully, automatically and reliably regulate blood sugars without needing any manual input about carbs, activity level, barometric pressure or planet alignment. I dream that it will be available to V by the time she turns 18. However, take note: artificial pancreas is not a cure. While it will provide for effortless management, it will not make diabetes go away.

Sometimes I wonder if maybe my bigger problem is that the dream part of my brain is broken? You know how when normal people dream about winning the lottery, they picture themselves rolling in cash, taking exotic vacations, buying all kinds of nice things, becoming philanthropists extraordinaire, and doing all kinds of other exciting things? Me, when I dream of winning the lottery, I dream of winning just enough money to be able to pay off all our debt. That is it. Pathetic, huh? In my dreams, we pay off the debt and move on with our lives as usual, unburdened by debt, able to build up savings and college accounts for kids, taking un-extravagant family vacations once or twice a year, but working and living as if nothing changed. Except I would definitely gut the kitchen and update it, but I would want to stay in our modest happy home, thankyouverymuch.

OK, I digress… What’s my point? I guess my point is that I’m dreaming of things that have a realistic promise of materializing in the near future. (Although how the heck winning the lottery fits into that is beyond me!) A cure is nowhere on the horizon, as far as I can tell. When the next new breakthrough makes it into Phase 3 HUMAN trials, let’s talk. Until then, I’m letting it go. You’ll find me fantasizing about the artificial pancreas and finally getting rid of that stupid breakfast bar in the kitchen.